Our Daughter’s Anxiety Connected to Sensory Processing Disorder

Sensory Processing Disorder

At the time, her anxiety was so overwhelming, she had trouble leaving the house. She’d curl up in the fetal position and cry. A lot. (It sucked.)

Anxiety, if you ever have experienced it, doesn’t make sense.

After a miserable mountain vacation trapped in our condo, I realized that she needed more help than I could give. Professional help.

So, we went to a therapist. Well, two cognitive therapists. (In retrospect, I would recommend finding a good art or play therapist. That’s another blog post though.)

After seven months or so of weekly therapy sessions and little improvement, the last therapist suggested we get AJ evaluated at Children’s Hospital for SPD.

Fast forward to a diagnosis — SPD with tactile over-responsiveness. In other words, her tactile sensory system was over stimulated all the time. It explained everything – like why she hated to be held as a baby, why she flinched when we hugged her, or why the lining of her socks had to be smooth and thread free. Maybe, it explained the anxiety. We would soon find out.

Occupational Therapy at Children’s

Brushing and compressions worked miracles – which is bizarre because they seemed a bit like voodoo. But the proof was the result . . . after only a few months, she was a different kid.

The biggest immediate result? The anxiety disappeared. (And with it, the curled-up in a fetal position melt-downs.)

Another reward of the therapy? Hugs and the occasional cuddle. Soon, AJ wanted me to lay down with her while she fell asleep. We had some catching up to do! I got to make up for so many years where she didn’t want to be touched.

Update

We didn’t do the therapy forever – at home or at Children’s. For one, it was just too expensive. We stopped when we saw results after about 9 months.

Now, when we see that AJ’s over stimulated or seems “off,” we’ll start brushing again for a few days. Sometimes we give her a full-body, super tight-squeeze bear hug. It immediately calms her down. (I know, it seems weird for a touch-sensitive person but totally works!)

AJ is growing into herself every day, without the interference of her over-stimulated senses. She’s an amazing child with a lot to offer the world. If it weren’t for us discovering SPD, we wouldn’t be where we are today.

Which is why I’m telling you this. Only very recently are doctors considering SPD a legitimate diagnosis. But whether or not it’s in the DSM or people think it’s a “fad,” it’s a very real condition. And something you get help for.

Further Reading

Sensory Processing Disorder involves one or more of the senses and can be either over-responsive or under-responsive. The opposite of AJ is tactile under-responsive, also called a sensory seeker. These are kids who always are touching you, in your lap, petting others, hugging, seeking to be touched. I know of kids whose affected senses are hearing and vision.

My son, who is 2yo, was diagnosed with SPD this year. He is hypersensitive to touch, noises, and smells. He is hyposensitive to proprioceptive, vestibular, and oral. He gets very anxious when others talk to him or touch him. We work with OT once a week and have attempted using the brushing technique and the joint pressure as well. Unfortunately neither of these have helped him. Occasionally he allows us to do the joint pressure, the brushing technique causes a complete meltdown. Whenever someone touches (especially some who wears perfume and is aggressive) him he has several bad days. He will not wear clothes, has night terrors, sleep talks, nightmares, wakes up several times in the night. This can last a couple of weeks. Trying to explain SPD to family and others has been extremely difficult. Many have been skeptical of the diagnosis. Our Occupational Therapist has been great and has been willing to change appointment times to help with education, but we have yet to get those involved to be open to this. We just want our son to have to best life possible. We know it takes everyone involved to be supportive of him.

It sounds like it’s been so tough for him and you!! I wish I could just give you a big hug and tell you it will be okay.

It’s really hard. I get it. You’re doing everything you can do. Keep on going!! And try to ignore those people who don’t understand. There are people like me who do understand. Find us so you can get the compassion and support you need to do this really hard job.

Our daughter fought us (kicking, flailing) on the brushing and joint compressions — but we still did it 3 x a day and after about 3 weeks (I think it was), we noticed a shift. I think we also bribed her quite a bit because we hoped that if we could just get over the hump, she would feel better in her skin. I don’t know if it helps to hear but maybe it’s like this for many of our kids.

I just want to let parents of kids with sensory issues also consider the possibility of Non Verbal Learning Disorder. It is probably even less understood and recognized than SPD. But the early sensory issues are the first sign, SPD is also a part of NVLD. The name alone is confusing, it sounds like it’s a label for a child who doesn’t talk. My husband found a description of it 14 years ago when our child was being diagnosed with SPD and commented that it sounded like our daughter. But I looked at the title and said ” no way, she is VERY verbal!” If you also notice struggles with math after the 3rd grade, anxiety, depression, continued social problems it may be time for another evaluation. And also, hearing from other parents of young children, I am a bit troubled that SPD still isn’t well recognized in schools. It’s been 14 years since our daughters diagnosis, and I thought we would have made more progress by now. As parents I know we have. But educators maybe should be required to have more training in the signs of Learning Differences. People are not cookie cutters of each other. Schools need to start recognizing that.

My daughter is 20 years old and was diagnosed at age 6 with Sensory Integration Dysfunction, now called SPD. Back 14 years ago nobody had heard of the disorder. She was miserable in school, where her sensitivities and anxiety were triggered horribly, but was actually only mildly affected at home. She was bullied and excluded for her odd behavior and melt downs. Teachers did not understand this disorder and had never heard of it. By middle school, she was an anxious and depressed wreck with school being the main source of her discomfort. She always did very well academically, won several writing awards, but she started seriously struggling in math. We had her tested again, and we got a new diagnosis of Non Verbal Learning Disability or NVLD. It is a right brain deficit. This explains the social problems, poor coordination, math issues. Sensory issues also present frequently with NVLD. And it is just about as unknown and misunderstood as SPD. At 20 years old my daughter is on 2 medications to help the depression and anxiety. Although very intelligent, she has a strong aversion to school due to years of torment and tried community college but did not like it. She also has anxiety about driving, so gave it up shortly after getting her license. We are now working on helping her find her niche in life, and to deal with the chronic anxiety. She does have a boyfriend she met through her hobby of cosplay. It is a long distance relationship as he lives out of state but they meet up every few months and skype daily and play online games together. She is into costuming and is very creative but also very disorganized and anxious about getting a job and living as an adult.

I haven’t written about this yet but we’ve found some hope in a program called Brain Highways — we creep (yes, belly creeping) and do the primal reflexes that will develop our lower brain. We’ve been doing it with our kids for only 3 weeks so I don’t have enough information personally on the results. However, I’ve talked to many people and read testimonials that it’s amazingly helpful for improving processing speed, SPD, anxiety, etc. because the cortex isn’t overloaded when the lower brain is properly developed. They have online programs and might be worth looking into.

Yes, we are still doing it — the kids (and us, too) have transitioned from only creeping 30 minutes a day to also crawling for 45 minutes of total floor time. (As well as other vestibular and proprioceptive activities.)

Yes, it has helped!! It’s a heck of a lot of work for us as parents to facilitate, learn everything from their provided materials, and to do it ourselves . . . but it’s helped. I notice improvements with: body awareness (personal space), hand-eye coordination, eye tracking, attitude, overwhelm. multi-step directions, many sensory things, handwriting . . .

I don’t think they would say that for sure but we are seeing big improvements with her behaviors — and we’re still doing the floor time and she’s behind since she’s having wrist issues. Maybe in a few months I will more accurately be able to say it’s gone. I don’t know but I hope so! 🙂

I can empathize, it’s so overwhelming. It helped me to just go slow and do what I could every day. You don’t have to do it all at once or know it all at once.

We did the brushing 3 x a day — before school, after school, and bedtime. I think we were supposed to do it more frequently but that was all we could do with the school schedule and her resistance to it. We noticed a change within a few weeks I think. (It’s been a few years now so I’m forgetting some of the exact details.) Keep going — you’ll be glad you did!!

We’ve been successfully working through our daughter’s anxiety for just over 6 years. We depend on Lemon Balm and keeping her busy. Competitive gymnastics has been amazing. But, at a mock meet when there was much less going on, lots of quiet, and only 2 events, she turned into rubber and broke her arm. It may be time for us to take the next step. I would really love to hear more of AJ’s behaviors and corresponding ages that were displayed due to spd/anxiety. We’re dealing with anger and occasional violence. Yup. Thanks

Up until the time we did the therapy recommended by the OT at children’s (brushing, etc) she had meltdown tantrums — I suspect these would have continued until we did the therapies no matter what her age.

She is not “cured” but so able to handle life so much better. When she has flare ups with behavior, I do the brushing again with her (she hates it and fights it- oh, joy) and that helps — also big bear hugs help calm her down.

My pediatric psychologist college, Dr. Lynne Kenney, reminded me that she feels like her skin is on inside out — and to continue having compassion for her instead of my first reaction of just weary annoyance / anger. That helped. My husband has to remind me of that A LOT when I get triggered by certain behaviors.

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Thanks for sharing your story with everyone. We are currently going to OT for sensory processing for my 3yo son. He hasn’t started school yet, but will be going to pre-school next week. Is there anything they (teachers) can do in the classroom to help? Will they recognize it as a real problem when I explain it to them?

Oh boy…our journey with SPD began about two years ago. It took another year to diagnose. Our challenge was not only to find a therapist who could help but to also find someone who would not go straight to medication. At the time, she was 6 and I could not justify putting her on medication as a first resort. Since then, we have worked with therapists, including OTs, to get some semblance of control over it. The brushing you mentioned with your daughter is a very effective technique with us too, as are joint compression. We are also having significant luck by monitoring the food she eats: trying to eat non-processed foods, staying away from food dyes (huge triggers). We still have meltdowns. In fact, just had a a major one this morning, but the frequency has diminished tremendously.

This post is my daughter to a T. All of the things cures she listed work for us every week. An some weeks are better/ worse than others. It is a real struggle we go through eery single day. Also a bit of advice for parents new to this, try a weighted blanket or vest or both. Teethers ( yes the kind for babies) come in many textures and some vibrate, these same my daughter from her habit of anxiously biting off her fingertips ( yes I’m serious). Other things we’ve done that help: a ‘sensory basket’ its full of things, pipe cleaners, a brush, a few teethers, some really fuzzy yarn, a feather, a stress ball full of sand, a pinecone… Anything your little one would like to manipulate ( which is likely to change). And we’ve established a habit of letting her know what to expect hem we’re going somewhere that may overstimulate her and to let us know when she wants to leave. ( sometimes she doesn’t know until it too late, be prepared for this and know your child’s cues)

It is so awesome to see the great results your family has seen! I work with people with developmental disabilities and we have recently learned about the Sensory Processing Disorder (SPD) and how it affects so many people…. including those we help through our services.

We too have found success through brushing and joint compressions as well as other sensory flows of the day which include different sensory options depending on what the person needs.

We have also seen some life changing results! (including lessening anxiety and deterring “aggressive behaviors” in some of the people we work with)

It saddens me to see a teacher write the comment below and it explains how a lot of kids aren’t getting the help they need or proper accomidations in school from the teachers. A suck it up or tough love attitude will not help these kids. It only makes it harder for them when the teacher doesn’t believe they have an actual issue that needs understanding and a different approach.

I teach 1st grade and this fits one of my students to a T. It is real disorder that can disrupt every aspect of life. Working together there are also many things her mom and I do to help her. She longs to not feel so much anxiety with the world around her. We owe it to here and every child to give them our best.

First, we have two with sensory! In fact, at the panel visits for both kids they took us in the OT room and said the words that our two are sensory opposites! I breathed, freaked, closed my mouth and then said what! I got the best answer I have ever had in 11 years, fast forward to today! Flight, Fright, and Fight! Our oldest tends to RUN from everything! Day one to now, he still is this child! Our youngest is the Fight one! Head banging and hitting and more aggressive. So that summed up my two little kids that day as if that OT lived in our home! She did explain that this will change at times and you will see new things or worse ones and that can change again! I then felt that sensory was a death sentence! We were chasing one, and asking for a helmet for the other, or maybe not! We were terrified! But, she gave me hope too! I watched her and a helper work with both kids and I saw MAGIC happen! My kids could work thru or around this! Later, at another OT place I was told again “Hey, they are what we know “! He is a Flight and she is Fright! This was years later, and a different OT! Yet, I have attended all of both childrens’ OT and Speech therapy and it is totally accurate! So, we put that knowledge in our parent list and we moved on! Guess what, we are able to work with these kids and to EVEN HELP THEM BE SUCCESSFUL, Now , if I can only get the school system to do all that it needs (sensory) we would be there! Schools wait to treat a behavior that happens after! So, they conclude it is anger and mental illness, and OCD! Why can, we not support sensory in schools? Why spend the money AFTER THE FACT AND ACCOMPLISH WASTED TIME AND EFFORT AND NOT GET OUR GOAL OF TEACHING MY KIDS! And, the crazy thing is I hear things like he is talking or she is singing! Or he ran and left the room or she hit the desk! No, duh! So, I ask what happened BEFORE THIS? And the school stares at me, then goes oh…. Nothing and you KNOW all the kids were fidgeting so yours are normal and need zero sensory and behavior punishments and better parents! Uggggggg! That is when my sensory explodes and my poor husband has to do “clean up” in the IEP meeting! Everyday, my kids can tell me of sorts what was the TRIGGER(s) to the end result at the school that day! Why is it impossible for staff at schools to see or believe this? Ps I do NOT allow my kids to have BAD behavior! They are given consequences for their choices! We differentiate between sensory, tantrums, anger, fear, etc. We give them these skills so they understand their feelings! Then, I give them support and training on how to deal with the Autism and the sensory! Both kids have been attempting mainstream for some time now! They have supports, yet often the access to these are denied by staff! Then the school covers this up too! What a huge mess, and a waste of my IEP time and all the hours that we met as a team! Makes tons more sense to have OT get the kid a seat cushion, and put it on top of a filing cabinet in the wrong room all day! Only one example, I have tons and tons more! Best wishes for all, believe in your kids and your love for them. By the way, I now know that I have huge sensory issues and it explains my whole life. My poor husband! : )

My son 9yo wouldn’t allow us to touch his head at all. Quite sensitive all over. We have recently found out about “retained primitive reflexes” (different professions may call this by different names). We found a gentle chiropractic clinic in Sydney that specialises in fixing it (don’t go to any old chiropractor!). Amazing. One 15 min session and we can touch his head! No longer sensitive at all. Worth every cent. Now getting all the other ones fixed. I’ve heard counselling can also do it but in 15 min? I think not! Converted! Now also working on fixing all his food allergies. Yay

Wow, very interesting! Our youngest was the same way with her head too. This was as an infant, I am not kidding! She moved on to squint and sort of blink you away if you tried to get close to her face. Then she moved to head banging and her proprioception was way off! SPD was an accurate DX, but it did not happen until 2 yrs! Then it took forever to find a huge vision issue too! So, I will look into your post as this is very interesting! She STILL gives you her forehead to kiss and protects her face and we told doctors this at the very beginning, the same as why she had horrible movement issues and play skills! At almost 10 years old I am still fighting with school system to help or to get a ” correct path” versus ignoring all! And, her seizure doc is so confused that he is trying to pin on a Behavior versus medical reason to push off on someone else! Best of luck to your family, sounds like you are on a good path and best wishes for the allergy work as I know what fun that is!

My son was 5 when he was diagnosed with SPD and anxiety/ocd, but he had suffered a while before we got a diagnosis. It was so nice to have a name for it and a plan of care. He is 8 now and getting better. Thank you for sharring it is nice to hear similar experiances.

My son also had/has SPD and ADHD. OT was absolutely, hands down, the best thing. He still isn’t crazy about hugs but he’s outgrown a lot of his sensory issues and anxiety. All of the physical and emotional energy I invested when he was younger was worth it! In retrospect I wish I would’ve worried less about what others thought and not feel I had to justify our routines because it was different than “normal”. Don’t forget to take time for yourself – that’s the other thing I wish I had done differently. Now that he’s doing well it’s time to get myself pulled back together. 😉

Thank you for sharing this! I have wondered about my son for some time now, even spoke to the doctor about it but was told it was just a little anxiety. It didn’t seem right to me then. Definitely going to pursue getting him tested to see if we can find some answers.

My daughter has always seemed to be easily over-stimulated. As an infant, she HATED the “enrichment” toys that had flashing lights, sounds, and movement. She only wanted to sit in my lap and be read to — quietly (no acting out the story with exaggerated emotion like most kids seem to like). She’s a teen now and still has trouble with anxiety issues and feeling overwhelmed by loud noises, crowds, etc. You mentioned your child had tactile issues. Is there also a subtype of this that includes over-stimulation of the other senses (especially sight and sound)?

What a wonderful thing to see…the words SPD and Anxiety together in the same sentence! It’s been a bumpy road figuring out that the two are so tightly intertwined. Despite my background in Education and Psychology I couldn’t quite make the connection between the two until we had to make sense of our own daughter who was born too sensitive for this world. We understand her so much better now and there are so many more ways we are able to help her to grow up in a world that (for the most part) doesn’t understand her. I was so pleased to read that you would suggest other interventions rather than relying on cognitive therapy. There are so many things we can do to help our sensory children by first getting to understand them from the inside out. I share bits of our ever evolving journey on my blog. I’m so glad that I found your site today and look forward to following what you have to share.

Oh goodness, thank you so much for this post…It’s like you are describing my life but my girl is just two. I have known since she was 4 months old she had SPD but everyone ignored my pleas. Finally have an appointment for an evaluation in two weeks, but the woman who did the intake questionnaire said she has no doubt what is going on. It’s been terrible trying to take her places, her anxiety is thru the roof. So sad to see such distress. I found you by googling “Sensory processing disorder” anxiety improvement, so I am so happy to see that OT worked for you and it has made a big difference. Nobody understands how upsetting it is as a Mom to not be able to hold and comfort your child. Thank you.

My 22 year old son had sensory integration issues as a child. He now suffers with anxiety and panic attacks. Doctors and meds. have not made much difference. This is the first time I have heard of sensory and anxiety linked… I’m not sure what to do or think, but it gives me pause for reflection. Thanks for sharing.

I am a mother of three and have also elementary school taught for almost 15 years—- I find it amazing that EVERYTHING—and I mean every single ‘different’ personality trait carries a label/diagnosis and ‘cure’. I’m pretty sure I have OCD and ADD and anxiety and sensory processing disorder any number of spectrum disorders. Gosh- what a world we live in—

Please don’t criticize those of us who are posting with children who have characteristics that are too the extreme and not the norm, which interferes with not only there education but the qualities of their lives. Shame on you, as a former educator. These problems are very real and at times very troubling and disturbing. Not to say very sad for those of us how have to watch our children cope with their severe anxieties or sensory problems. Try walking in our shoes for a day… a week…. or a month… then you can judge us.

I recently went to a speaker who taught us (teachers and OT’s about sensory processing. He also stated the same thing you did, some children are on the extreme. I had a student who had difficulties like your child, once I learned about the ways to help the child in school, behavior changed within weeks. We can’t teach a child that is curled up in the fetal position under our desk!

Thank you so much for this info on SPD – my daughter is now 22 but you have described her so perfectly. Another thing for her was colours – she said the colour purple made her feel sick. I am a preschool teacher & it is all making sense now as I reflect on children whom the experts wanted to label with autism & I fought with them as I knew it wasn’t right – thanks again! I go back to work with a new insight into my 40 children!

Thank you for sharing this post! I am familiar with SPD… it is not uncommon for children with Down syndrome to have it (my son has Down syndrome), often on a lighter scale. And brushing is what the families and therapists use, and the heavy vest/squeeze hug, and also the fabric-made swing that hangs from the ceiling, and sometimes a small tent in the classroom for the child to go to. Again, thank you for sharing this! I will be sure to post it/share it! (I get quite a few clients in my Montessori programs who have children with varying degrees of SPD.)

Vibration is great for giving kids some proprioceptive input. I bought two of those massage pads that vibrate and provide heat (we only use the vibration) for them to lay on sometimes. Had to get 2 so they wouldn’t fight over 1.

My family has been on a 2 year journey as well, to figure out what was wrong with my son. He, too, has SPD, specifically under responsive vestibular system, vision processing problems, under responsive touch, and under responsive proprioception. He has done 8 months of vision therapy with a developmental optometrist (google COVD to find one near you) followed by 6 months of OT for SPD. We got the vision diagnosis first, then when everything wasn’t fixed completely by therapy, found out about SPD and OT.

If I had to start over, I’d probably do it a little differently, as I am still learning. First, I would find someone who can assess primitive reflexes. I have just read about the Masgutova Method, but have no experience with it. It seems that they are doing this type of thing at the Brain Balance places, but I do not live remotely close to one, so I have no experience with them either. This approach seems logical, though. There are many primitive reflexes which appear and then become integrated at certain points in life. The theory is that sometimes one or more reflexes do not integrate, and when that happens, other processes that use that neurological pathway are more difficult, as though there are speed bumps there. Therapy is then done that targets that reflex, and it becomes integrated. After reflexes are integrated, then move on to the other therapies.

I can not say enough about how vision therapy and occupational therapy changed my son’s life. Before, he was diagnosed ADHD, but was truly very close to Asperger’s with some of his sensory obsessions. Now, he is still ADHD, but it’s mild. In his GT class of 3rd grade kids at a public school, he seems very normal. Whenever he gets sick (had a recent sinus infection) he regresses a little and has poor coping skills. Outside of that, though, he is doing great.

Tina My son has this and he is part of the reason I am going to school to be a counselor. My question to you is, in hindsight, why would you recommend an art/play therapist over a regular therapist? I have yet to obtain my degree but after I do I want to get my certification in play therapy. I’m curious as to your thinking and wondering while I’m getting my certification will other parents who come to me feel the same way? Thanks.

the cognitive therapist was asking too much abstract thinking for a 6 and 7 yr old – to be metacognitive about the worry, and replacing the worry with a new thought. Pretty hard stuff for a young person!

One other thing to note, I am making a sensory blanket. It has channels , then boxes filled with rice or some heavy filling. It is small and heavy (feels like having that heavy x ray thing layed across your chest before they do an x ray) i have heard there is some measure of peace/satisfaction/calming from having something like this on top of you for a bit and sounded worth a try.

I bought a weighted blanket for my child. If you are making your own, I’d recommend filling it with something that can get wet, not rice or beans. At some point, it is likely to get wet when someone spills something on it and you will want to wash it. I had to buy another for my other child, as they both loved the weighted blanket. Ours seems to be filled with something like little plastic balls. I have washed them both in the washing machine with great results.

I have 4 kids who have SPD, two have incredible anxiety also. The newest therapist gave me a great article Make Sense of Every Child found in Montessori Life. It is really good for helping moms/teachers/caregiveers have some ideas about what to do. My oldest is 13 and we are in therapy and have to take meds; I really wish that her doctors when she was younger had been clued in to any of this. I took her in at 9 months because when you put onsies or socks on her she screamed like you had set her on fire (this was the first of 13 years of not being able to handle her sensations) and the doctor told me not to put her in onsies. (which is what I did, but didn’t solve or help the real problem). I feel like I am a better parent to my 5 year old who is a copy of my oldest. My other two are the opposite and need TONS of touching and the harder the better. They are rough, mix the two together and sometimes it’s like dynamite around here! BUT massaging their legs and feet has done wonders at getting them to sleep at bed time. We do a lot of walking on our toes and other compressions for the other two. I wish more people talked about things that they have done that worked. My children are bright, fun, and wonderful little people and the SPD can really get in the way of them being who they are.

Oh, you have a lot on your plate! Yes, SPD totally interferes with who they are meant to be- boo. Like you, I wished our doctors had a clue – and hate that I lost so many years. I feel for your oldest daughter, poor thing. I hope you can find what works for her. Thanks for the book recommendation and sharing your story. Hugs, Melissa

Thank you for posting this. I can relate to your daughter’s story! My son has days where it is nothing but meltdowns and doesn’t want to leave the house. I’m currently in the process of getting him evaluated by an OT through the school district. Other than that, I don’t feel like I am being taken seriously. I enjoy reading other people’s stories because it helps give me motivation to keep fighting and it is also nice to know that I’m not alone even though I feel that way most days!!

you are not alone! It’s so challenging especially when no one around you seems to understand. I really feel thankful for the internet community or I’d probably be in the looney bin right about now! Keep going, Melissa – you’re doing the right thing for you son.

Thank you for sharing this. My son has SPD that effects multiple sensory areas for him. Meaning he has the tactile over-responsive (and shares many of the same symptoms that your daughter did), he also has hearing and taste sensory issues as well. It can be very frustrating. Not being able to hold/touch your child is heart breaking. My son’s food aversion (he only eats bland yellow foods) also can be overwhelming. The whole concept of if they get hungry enough they will eat doesn’t work very well with SPD. Also, it seems that many people know about autism but know nothing about sensory processing disorder. It is nice to know I am not alone. Do you have any other suggestions besides OT – We go to Children’s as well and have the brush too (it works wonders). Just being able to touch for a few seconds without him cringing is wonderful. Thanks again!

exactly! AJ went days w/out eating because she only would eat ice cream. I finally gave in b/c I didn’t want her to starve to death. I’ve since realized that those parenting books do not apply at all to our sensory kids. We have tried so many things, Kim — I have no idea what worked specifically but here are a few things for home we’ve done – roller skating inside the house sitting on an exercise ball sitting on those round blow-up seat cushions (forget what they’re called) indoor swing (IKEA has some that are cheap – challenge is to find the right beams) outdoor swing set helps a lot trampoline – inside and outside weighted blanket What have you been trying?

Thank you for sharing. We too, are on a journey of discovering about SPD with our daughter. She is tactile over responsive, but also has visual and auditory processing issues. I would encourage everyone to have their children’s vision tested by a behavioural optometrist, and consider auditory processing testing too. Our daughter has always surprised us by her outstanding effort at school, but would have huge meltdowns and turn into another child as soon as she was collected from school. We now understand that she was exhausted from trying so hard all day and completely sensory overloaded. OT has made a huge difference and we are now working with a behavioural optometrist who identified that our daughter was experiencing double vision when concentrating for too long among other issues relating to her brain trying to process the barrage of visual signals her over responsive eyes were sending. I must say that while there are some great books out there, finding professional help has been so challenging, and we have had to jump through hoops to find the right pathways. It is also a challenge financially, and I really feel for the people who are not resourced to find a diagnosis for their child or to be able to pay for help. I hope this is helpful for someone.

Our son has the same diagnosis. He is going to OT, PT, & ST all w/the iLS audiotory system which we are ordering for at home. It took years to get him diagnosed. I took him to various doctors, therapists, counselors, psychiatirsts & finally this one psychologist that interviewed me about him; read his IEP from school & the results of the ADD, ADHD, Autism Spectrum, & Asperger testing; & spent less than 10 minutes w/him and said that he has SID. I looked at her like she was from Mars because I had no idea what it was. She explained it & she nailed it–that was him. He wants to be held tightly but not touched lightly, hates crowds, loud noises, sudden anything, the feel of paper, when reading black & white pages w/out pictures for a while the words blend into gray, and he has the auditory problem as well. He really wants to like people but he can’t stand to be around them. He slams into me or presses against me & stays there, but don’t let hardly anybody else touch him at all. He is so sweet, loving, & smart. After all of his evals that took months, they can’t believe he’s made it to fifth grade @ 10 years old in normal school , but I work w/him at home all the time. We have just started the therapies & haven’t got the machine for at home yet. Just the therapy is helping, but he had a meltdown the other day & threatened suicide. He later said it was because he was so overwhelmed & that he dosen’t think about things like that normally–isolated event. Has anybody else heard of that?

Poor baby, it is so hard to be in his body. A great child psychologist named Lynne Kenney once told me that for these kiddos, it feels like they have their skin on inside out. Who wouldn’t be hating that?

You are on the right track — stick with the therapies. Even though our daughter fought them EVERY SINGLE TIME (sigh) they did her a world of good. (I’m not sure about the machine? What is that?) We also were doing vision therapy, too, since she had some issues tracking.

We tried several dud therapists — I realized only after a few years with lots of $$ spent. If someone is not working for you– SWITCH!! I wish I hadn’t wasted so much time. Actually, I would say going to OT is better than therapy at this age since it’s SO HARD for them to think outside of their immediate body issues to controlling behaviors. I also recommend Dr. Lynne Kenney for suggestions on next steps. She does phone consults. http://www.lynnekenney.com

It’s exhausting because when a child has special needs, so does the whole family. Make sure you find time to recharge your batteries. I also found I needed therapy to help me be more unconditional in my love and work through my own issues.

Thank you for sharing this. You are not alone. There are many, many children out there with sensory processing challenges. Their reactions are often misunderstood and difficult for other family members to deal with. I share your challenge and my wish for all parents is to ‘seek first to understand’ their challenging child and ask for help from a seasoned occupational therapist. With diagnosis and treatment, a beautiful transformation is possible along with peace and harmony in the home. Ahhhhhh…

Yes! Our daughter is both. She hates hugs, clothing with seams etc, but craves messy touch like play do, water, etc. Our OT gave us a information sheet on this, but I think it is also covered in a book called Raising a Spirited Child by Mary Sheedy Kurcinka

Yes! Our OT explained that with a combination like this the problem is with sensory modulation. Our son will cringe from touch and noise and become easily overstimulated, but will also run and crash and seek stimulation. It’s a pendulum that can never find it’s middle.

I am astounded that this is still not recognized by the Psychiatric community. Thank you for spreading the word about SPD.

What a wonderful Momma you are to fight for your daughter and get her the help she needs. And the hugs must have made you melt inside. I can’t imagine how hard that must have been to go years without physical affection.

What a wonderful mom you are to seek help! It can take years to get a proper diagnosis, not to mention treatment that works. You’re totally right, this is all kind of voodoo. I couldn’t understand how vestibular stimulation would help my son. Read every book I could get my hands on and “took their word for it.” Thank you for this post! Getting the word out is so important. With age, this does get better. Maybe it’s because of all the treatment. My son found a small trampoline in our familyroom helpful. He started turning towards that when he was anxious. He also wore his SPIO suit (we called it his power suit) which helped tremendously. He doesn’t care for it now that he’s older. I always know when he’s stressed because he turns on classical music and spends time alone in his room.